Edward's Story

I've been battling sleep apnea for as long as I can remember. I've been using a CPAP machine with mild success for over 8 years now, and have had several corrective surgeries to try and offset the breathing abnormalities I've been suffering when prone or asleep.

In the 5th grade or so I had braces applied for which they extracted several healthy adult teeth (I believe 7). 

In the 7th grade I got my braces off, but I also underwent the first surgery for the snoring that had become so obstructive that I was enduring the ridicule of my peers and their families any time I slept away from home. It was audible through several walls and on more than one occasion prompted the adults to drag my mattress into the hallway or lobby and make me sleep there. I dreaded getting invited to stay anywhere over night and had to explain that they wouldn't like my snoring. Each and every time I knew that despite their insistence that they probably wouldn't even notice, I'd still hear all about it the next day. Because of the humiliation I convinced my parents to take me to an ENT who removed my tonsils and adenoids on the pretense that it would make the snoring go away. It barely had an impact.

To me there was no name for what I was suffering from, but I was acutely aware that something was wrong with my sleep. I was getting yelled at by my parents as I tended towards sleeping later and later in to the day to make up for the sleep I wasn't getting at night. By the time I was in high-school people who witnessed my sleeping were either full of laughs about how amazing my snoring and ability to fall asleep anywhere were, or adamant that they were worried I might stop breathing entirely. In high school I became vaguely aware of the term Sleep Apnea from one of those late night commercials and was immediately convinced that was what I had, but with the shortsightedness of youth and the lack of perspective as to how badly it was affecting me kept me from seeking further counseling on the subject.

In college a girlfriend provoked me to see a sleep specialist because she and my roommates were concerned I might go to bed one night and not wake up. It was here that I was diagnosed with severe sleep apnea. At the time I was having 72 apnea events per hour and had undergone not yet undergone CPAP treatment. For some sense of scale, anything over 5 events an hour is when they start to recommend CPAP therapy, and anything over 20 events an hour falls into the 'severe' category.

The experiences I've had with CPAP over the past decade, both positive and negative could fill a wordy post on it's own, so I won't get in to that too much here. Regardless, last year things came to a head when even while using my CPAP machine, I routinely slept in excess of 12 hours, and was considerably fatigued when awake. On the nights when I would fall asleep without the machine I seriously woke up with the impression that I almost didn't survive the evening. I underwent another sleep study, was informed that my apnea events had risen to 84 an hour and the implications of how dangerous that was didn't really need to be expressed in words.

As a response I pursued corrective surgery and last summer had a hyoid stint, in which the bone in the throat my tongue and other mouth anatomy is attached was pulled down slightly to tighten things up a bit and keep the airway open during sleep. They also did a UPPP which means they attached the uvula to the roof of my throat. Recovery was a difficult 4-6 weeks, but I felt an immediate benefit to my quality of life. After 9 hours of sleep even without the CPAP I felt comparably well rested. Unfortunately the sleep study results weren't as promising as I'd hoped. Since those surgeries I'm down to 52 events per hour, so we saw a calculable benefit of about 30% or so. I'm not off the CPAP but it is easier to tolerate than before and I'm not afraid of dying without it. 

Incidentally, my machine stopped functioning last month and because of insurance bureaucracy it took a month to get a replacement. The approach that CPAP should be enough (which was greatly advocated by the company that sells CPAP machines) was perhaps a real threat to my life and a genuine threat to my already scary health situation.

Story over? I wish. Now that I've changed states I have been seeing a different line of specialists through a different sleep clinic, and I'm getting some new and troubling information. Now they want to restructure my jaw (which incidentally, will require me to get wired up with braces again) because according to what the dental surgeon told me that when I was a kid instead of fixing my jaw they attacked the cosmetic symptoms that were associated with it instead and started ripping out teeth and wiring up my jaw.

Sleep apnea has ruined my life; I have suffered severe depression, anxiety, and my unmanageable fatigue levels have consistently stood in the way of my relationships and career prospects. My heart, lifespan, and dental health have all been compromised by this condition and the treatment. It is only now that I am starting to get better that I have developed some perspective on what happened to me. I've finally gained an understanding as to what it is like to live with (comparably) healthy sleep, but I'm still here at the point where I am am considering further painful and humiliating procedures to correct for a condition that I am now coming to believe was exacerbated or downright caused by the orthodontics industry. 

I have permanent physical scars from these experiences, and indescribable emotional ones. If I go through with the jaw procedure, it will require me to live the rest of my life with a drastically different facial appearance that I cannot see before committing to it. I'm still reeling from the shock and unsure of how or if I'm actually going to proceed, but I am beginning to believe that my parents were taken in by some charlatans who knowingly put my health at a severe detriment to sell them my "nice" smile. I am not a medical professional myself, so I cannot specifically pinpoint them as responsible at this time, but I certainly want it explored for the sake of anyone else who might suffer a similar fate.

Showing 1 reaction

Please check your e-mail for a link to activate your account.
  • published this page in Patient Stories 2015-02-06 14:11:49 -0800

Sign Our Petition Volunteer Find an Event

get updates